Health-related quality of life in cleft lip and/or palate patients – A cross-sectional study from preschool age until adolescence

Naros, Andreas; Brocks, Annekathrin; Kluba, Susanne; Reinert, Siegmar; Krimmel, Michael

doi:10.1016/j.jcms.2018.07.004

Cited by 25 publications

(31 citation statements)

References 29 publications

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“…Furthermore, there are disparities in access to such therapies for OFCs (5), similar to other malformations with complex medical and surgical needs. Some studies have suggested a reduced quality of life for individuals with OFCs (6), while other studies have identified higher risk to certain types of cancers (7–9). Thus, it is critical to identify etiologic factors leading to OFCs to improve diagnostics, treatments, and outcomes.…”

Section: Introductionmentioning

confidence: 99%

Whole genome sequencing of orofacial cleft trios from the Gabriella Miller Kids First Pediatric Research Consortium identifies a new locus on chromosome 21

Mukhopadhyay

Bishop

Mortillo

et al. 2019

Preprint

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51 Orofacial clefts (OFCs) are one of the most common birth defects worldwide and create a 52 significant health burden. The majority of OFCs are non-syndromic, and the genetic component 53 has been only partially determined. Here, we analyze whole genome sequence (WGS) data for 54 association with risk of OFCs in European and Colombian families selected from a multicenter 55 family-based OFC study. Part of the Gabriella Miller Kids First Pediatric Research Program, this 56 is the first large-scale WGS study of OFC in parent-offspring trios. WGS provides deeper and 57 more specific genetic data than currently available using imputation on single nucleotide 58 polymorphic (SNP) marker panels. Here, association analysis of genome-wide single nucleotide 59 variants (SNV) and short insertions and deletions (indels) identified a new locus on chromosome 60 21 in Colombian families, within a region known to be expressed during craniofacial 61 development. This study reinforces the ancestry differences seen in the genetic etiology of OFCs, 62 and the need for larger samples when for studying OFCs and other birth defects in admixed 63 populations. 64

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Section: Introductionmentioning

confidence: 99%

Whole genome sequencing of orofacial cleft trios from the Gabriella Miller Kids First Pediatric Research Consortium identifies a new locus on chromosome 21

Mukhopadhyay

Bishop

Mortillo

et al. 2019

Preprint

View full text Add to dashboard Cite

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“…Oral health-related quality of life of patients with cleft lip and palate has been receiving attention in the recent literature. [13][14][15] In spite of literature showing that over 60% of centers across the world use PNAM, 8 little is known about its impact on the OHRQoL of children with cleft lip and palate. This paper aimed to address the gap in literature.…”

Section: Discussionmentioning

confidence: 99%

“…This is attributed to the fact that while cleft lip and palate does cause dental anomalies such as missing or malformed teeth, they do not appear to affect oral health or oral function. [13][14][15] There are several scales to measure the OHRQoL of children, and many of them such as the parental perception questionnaire (PPQ) or the early childhood oral health impact scale (ECOHIS) are filled by the parent and have been successfully validated in Arabic. 17,19,20 Our decision to use the COHIP-SF, a relatively new scale, was based on the elaborate nature of the social and emotional impacts studied in the scale.…”

Section: Discussionmentioning

confidence: 99%

“…Multiple studies have shown that the validation process of modern OHRQoL scales have sufficient validity to overcome memory recall bias. 13,16,19 Traditional studies on the quality of life have focused on the overall health-related quality of life. In this regard the current study is an important addition to the literature as it attempts to assess the impact of a single procedure (PNAM) on the OHRQoL of children with cleft lip and palate.…”

Section: Discussionmentioning

confidence: 99%

“…11 There have been several attempts to use parental questionnaires to examine the OHRQoL of children with cleft lip and palate, both before and after the surgery. [12][13][14][15] However, there are no data on the impact that PNAM can have on the QHRQoL. There has also been no attempt made to understand the impact of PNAM on the OHRQoL of children with cleft lip and palate.…”

Section: Introductionmentioning

confidence: 99%

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Impact of Presurgical Nasoalveolar Molding on the Parental Perceptions of Oral Health-related Quality of Life of Children with Cleft Lip and Palate

AlAnazi

AlHayyan

Pani

2020

The Journal of Contemporary Dental Practice

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Aim:The study aimed to examine the oral health-related quality of life (OHRQoL) of children with cleft lip and palate who were treated with presurgical nasoalveolar molding (PNAM) and to compare the results to age-and gender-matched controls without cleft lip and palate. Materials and methods: Parents of 51 children with cleft lip and palate who were treated with PNAM were administered a validated Arabic version of the short-form child oral health impact profile (COHIP-SF) and were asked to rate their experience with PNAM. The children with treated cleft lip and palate (study group) were age-and gender-matched to children with no cleft lip and palate (control group). The differences in COHIP-SF domains were compared between groups using the Mann-Whitney U test. Results: The children in the test group had significantly higher COHIP-SF scores than in the test group (p < 0.001). However, there were no significant differences in the oral health (p = 0.532) or the oral function (0.232) domains. There were, however, significant differences in the socioemotional domain (p < 0.001). Most of the parents (86%) of children with cleft lip or palate felt that they would recommend PNAM to other parents. Conclusion: While there are no differences in the oral health and functional domains of OHRQoL, children with cleft lip and palate treated with PNAM have significantly lower scores in the socioemotional domain of OHRQoL when compared to age-and gender-matched controls. Clinical significance: Presurgical nasoalveolar molding does not have any negative impact on the OHRQoL of children with cleft lip and palate. Keywords: Cleft lip and palate, Oral health-related quality of life, Presurgical nasoalveolar molding.

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How Should We Decide Whether and When Some Care Is Better Than No Care?

Koch

Meara

Wall

2019

AMA Journal of Ethics

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This case of cleft lip and palate repair by a surgical mission team is common. Low-risk, single-procedure surgical interventions requiring minimal follow-up with substantial quality of life improvement are well suited for this type of mission. However, cleft repair can also be quite complex and require multiple surgeries and other care over time, postoperative surveillance, and speech therapy. These benefits and burdens prompt us to investigate, from clinical and ethical perspectives, whether and when some surgical care is better than none. We argue that, when performing surgical interventions in low-and middle-income countries, mission teams should consider a systems-based approach that emphasizes collaboration, context, and sustainability. Case JJ was born with a cleft lip and palate. As a result, he has developed problems with oral competence, feeding, speech, and social acceptance-due to his appearance. He is 4 years old and lives in a rural community in Central Africa. JJ's family heard that a group of surgeons from a university in the United States were coming to a nearby town to offer free cleft lip and palate repairs. JJ and his family and siblings traveled an hour to seek care, and JJ's family waited all day to finally see the surgeon and resident physicians who repaired JJ's cleft.

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Health-related quality of life in cleft lip and/or palate patients – A cross-sectional study from preschool age until adolescence

Cited by 25 publications

References 29 publications

Whole genome sequencing of orofacial cleft trios from the Gabriella Miller Kids First Pediatric Research Consortium identifies a new locus on chromosome 21

Whole genome sequencing of orofacial cleft trios from the Gabriella Miller Kids First Pediatric Research Consortium identifies a new locus on chromosome 21

Impact of Presurgical Nasoalveolar Molding on the Parental Perceptions of Oral Health-related Quality of Life of Children with Cleft Lip and Palate

How Should We Decide Whether and When Some Care Is Better Than No Care?

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